Necessary but not sufficient? Engaging young people in the development of an avatar-based online intervention designed to provide psychosocial support to young people affected by their own or a family member's cancer diagnosis.

OBJECTIVE: This study discusses the challenges and successes of engaging young people in a project aimed at developing an online counselling intervention for young people affected by cancer. CONTEXT: For younger people with a diagnosis of cancer or who are caring for someone with cancer, the psychosocial consequences can create significant challenges for their social and educational development. Whilst young people have been shown to be reluctant to make use of traditional face-to-face counselling, research is beginning to suggest that effective therapeutic relationships can be formed with young people online. DESIGN: The first phase of the study involved working with a 'Young Persons' Panel' of healthy school pupils and university students to develop and pilot an online counselling intervention and study materials in preparation for a pilot evaluation of the intervention. INTERVENTION: An avatar-based virtual reality counselling world was created where young people can create their own avatar and receive counselling over the Internet from a qualified counsellor via an avatar in a virtual reality world. FINDINGS: The process of engaging young people in the C:EVOLVE project enabled a unique intervention to be developed and demonstrated positive developmental opportunities. However, despite the rigorous approach to the development of the intervention, initial attempts within the pilot evaluation phase of the study showed difficulties recruiting to the study, and this phase of the study has currently ceased whilst further exploratory work takes place. CONCLUSION: This study has demonstrated the complexities of intervention development and evaluation research targeted at young people and the challenges created when attempting to bring clinical practice and research evaluation together.

A self-help coping intervention can reduce anxiety and avoidant health behaviours whilst waiting for cancer genetic risk information: results of a phase III randomised trial.

OBJECTIVE: The objective of this study is to evaluate the effectiveness of a self-help coping intervention in reducing intrusive negative thoughts while waiting for cancer genetic risk information. METHODS: Between August 2007 and November 2008, 1958 new referrals for cancer genetic risk assessment were invited to participate in a randomised trial. The control group received standard information. The intervention group received this information plus a written self-help coping leaflet. The primary outcome measure was the intrusion subscale of the Impact of Event Scale. RESULTS: The intervention significantly reduced intrusive thoughts during the waiting period in those reporting moderate baseline levels of intrusion (p = 0.03). Following risk provision, those in the intervention group reporting low and moderate intrusive worries at baseline reported less intrusive thoughts than those in the control group (p = 0.04 and p = 0.03, respectively). The intervention had no adverse impact in the sample as a whole. Participants in the intervention group with high baseline avoidance and negative affect scores were significantly more likely to remain in the study than those in the control group (p = 0.05 and p = 0.004). CONCLUSIONS: Findings that the intervention both reduced distress in those with moderate levels of distress and had no adverse effects following notification of cancer genetic risk suggest that this simple intervention can be implemented across a range of oncology settings involving periods of waiting and uncertainty. The intervention may also reduce the number of individuals dropping out of cancer genetic risk assessment or screening. However, those with clinically high levels of psychological distress are likely to require a more intensive psychological intervention.

Withdrawal from familial ovarian cancer screening for surgery: findings from a psychological evaluation study (PsyFOCS).

OBJECTIVE: A prospective psychological evaluation study of familial ovarian cancer screening (PsyFOCS) is underway in partnership with the UK Familial Ovarian Cancer Screening Study (UK FOCSS Phase 2). One of the aims of PsyFOCS is to examine factors associated with withdrawal from the UK FOCSS prior to the onset of 4-monthly screening. METHOD: 1999 of 3224 women completed a baseline questionnaire. 110 (5.5%) women withdrew from screening prior to their first routine Phase 2 screen, of which 73 (66.4% of withdrawals) had withdrawn because they had undergone removal of their ovaries and fallopian tubes (withdrawn group). The comparison group consisted of 1868 women who remained on screening. The baseline questionnaire included measures of cancer-specific distress, anxiety, depression and illness perceptions. RESULTS: Logistic regression analysis indicated that having had prior annual (Phase 1) screening (OR=13.34, p<.01), past experience of further tests (OR=2.37, p<.01) and greater cancer-specific distress (OR=1.38, p<.01) were associated with withdrawal for surgery. Belief in ageing as a cause of ovarian cancer was also associated with withdrawal (OR=1.32, p=.05). CONCLUSION: These cross-sectional data suggest that withdrawal from familial ovarian cancer screening may be influenced by both clinical and psychological factors. These may reflect women's experience of the drawbacks of screening and increased concern about ovarian cancer risk, as well as having opportunities to consider surgery as an alternative risk management strategy whilst using screening as an interim measure.

Psychological outcomes of familial ovarian cancer screening: no evidence of long-term harm.

OBJECTIVES: Ovarian cancer screening for women at increased genetic risk in the UK involves 4-monthly CA125 tests and annual ultrasound, with further tests prompted by an abnormal result. The study evaluated the longer-term psychological and behavioural effects of frequent ovarian screening. METHODS: Women completed T1 questionnaires before their first routine 4-monthly CA125 test, and T2 follow-up questionnaires one week after their result. Women with abnormal results completed a further questionnaire one week after return to routine screening (T3 primary end-point). T4 questionnaires were sent at nine months. Measures included cancer distress, general anxiety/depression, reassurance, and withdrawal from screening. RESULTS: A total 1999 (62%) of 3224 women completed T1 questionnaires. T2 questionnaires were completed by 1384/1609 participants (86%): 1217 (89%) with normal results and 167/242 (69%) with abnormal results. T3 questionnaires were completed by 141/163 (87%) women, with 912/1173 (78%) completing T4 questionnaires. Analysis of covariance indicated that, compared to women with normal results, women with abnormal results reported moderate cancer distress (F = 27.47, p ≤ .001, η(2) = 0.02) one week after their abnormal result and were significantly more likely to withdraw from screening (OR = 4.38, p ≤ .001). These effects were not apparent at T3 or T4. The effect of screening result on general anxiety/depression or overall reassurance was not significant. CONCLUSIONS: Women participating in frequent ovarian screening who are recalled for an abnormal result may experience transient cancer-specific distress, which may prompt reconsideration of risk management options. Health professionals and policy makers may be reassured that frequent familial ovarian screening does not cause sustained psychological harm.

Football and Dementia: Understanding the Link.

Football, also known as soccer or association football, is popular but has a potential link with dementia developing in retired players. The FA and soccer regulators in the USA have imposed guidelines limiting players exposure to heading, despite controversy whether this dementia is caused by heading the ball, a form of mild repetitive head injury (RHI), over many years. Substantial data exist showing that many ex-North American Football players develop a specific neurodegenerative disease: chronic traumatic encephalopathy (CTE), the neuropathological disorder of boxers. In the United Kingdom evidence for the neuropathological basis of footballers' dementia has been slow to emerge. A 2017 study revealed that in six ex-soccer players four had CTE with Alzheimer's disease (AD) and two had AD. A 2019 study showed that ex-footballers were 3.5 times more likely to die from dementia or other neuro-degenerative diseases than matched controls. We argue that in childhood and adolescence the brain is vulnerable to heading, predicated on its disproportionate size and developmental immaturity. RHI in young individuals is associated with early neuroinflammation, a potential trigger for promoting neurodegeneration in later life. Evidence is available to support the guidelines limiting heading for players of all ages, while professional and non-players should be included in prospective studies to investigate the link between soccer and dementia.

"The bigger the network the bigger the bowl of cherries...": exploring the acceptability of, and preferences for, an ongoing support network for known BRCA 1 and BRCA 2 mutation carriers.

There is increasing evidence to suggest that the ongoing information and support needs of BRCA gene mutation carriers are not being met. This qualitative study investigated preferences for an on-going support network for mutation carriers in Wales, UK. Seventeen female BRCA1/2 mutation carriers participated in focus groups which explored their current and on-going information and psychological support needs. The interviews were transcribed and thematically analysed. The results reflected a diversity of experiences and support needs. The majority of participants felt they and their families would benefit from an on-going 'support network' which should incorporate information-provision alongside elements of a traditional support group alongside, internet-based support such as web-based chat forums, matching schemes and professionally led workshops. Some degree of professional input into any such initiative was believed to be important. This study has informed the development of an appropriate support network based on a hub and spoke model to help carriers and their families adapt to living and coping with their genetic risk.

"I wouldn't classify myself as a patient": the importance of a "well-being" environment for individuals receiving counseling about familial cancer risk.

Many individuals receiving genetic counseling are healthy with no need for clinical cancer services. We have recently relocated our cancer genetic clinic to a small house on the outskirts of a hospital site which incorporates many elements proven to be important in creating a "well-being" environment. This study explored participants' perceptions of such an environment. Eleven semi-structured telephone interviews were conducted with women who had attended the new cancer genetic clinic. All were at high risk of familial cancer, five were gene carriers and three had a personal diagnosis of cancer. The new clinic was perceived to be less medical and more relaxing than other clinics, encouraged other family members to attend in support of the attendee and did not appear to impede information comprehension. The importance of not being made to feel like an ill patient was apparent. A desire for a quiet area allowing time for reflection whilst waiting for, and following, counseling was identified. A poorly designed counseling area could reduce the quality of the interaction between patient and counselor. Consideration of specific environmental design features may promote individuals' well-being and make those attending genetic counseling feel less like "patients." Larger studies should seek to explore further the potential associations between factors such as environmental design, psychological well-being and comprehension of risk information.

Understanding emotional responses to breast/ovarian cancer genetic risk assessment: an applied test of a cognitive theory of emotion.

This study explored whether Smith and Lazarus' (1990, 1993) cognitive theory of emotion could predict emotional responses to an emotionally ambiguous real-life situation. Questionnaire data were collected from 145 women upon referral for cancer genetic risk assessment. These indicated a mixed emotional reaction of both positive and negative emotions to the assessment. Hierarchical regression analyses revealed that the hypothesised models explained between 20% and 33% of the variance of anxiety, hope and gratitude scores, but only 10% of the variance for challenge scores. For the previously unmodelled emotion of relief, 31% of the variance was explained by appraisals and core relational themes. The findings help explain why emotional responses to cancer genetic risk assessment vary and suggest that improving the accuracy of individuals' beliefs and expectations about the assessment process may help subsequent adaptation to risk information.

A randomized controlled trial of a brief self-help coping intervention designed to reduce distress when awaiting genetic risk information.

OBJECTIVE: The aim of this study was to evaluate the effectiveness of a distraction-based coping leaflet in reducing distress in women undergoing genetic risk assessment for breast/ovarian cancer. METHOD: One hundred sixty-two women participated in a randomized controlled trial, receiving either the intervention or standard information. Data were collected through a postal questionnaire at entry into a genetic risk assessment programme and 1 month later. RESULT: Analysis of covariance revealed a nonsignificant reduction in distress in all women, and a significant reduction of distress among those with high baseline stress, who received the intervention. No gains were found among the control group. Measures of emotional response while thinking about cancer genetic assessment suggested these benefits were achieved in the absence of any rebound emotional response. CONCLUSION: The intervention offers a low-cost effective coping intervention, which could be integrated into existing services with minimal disruption and may also be appropriate for other periods of waiting and uncertainty.

The case for targeting community pharmacy-led health improvement: Findings from a skin cancer campaign in Wales.

UNLABELLED: The use of community pharmacies to deliver health improvement campaigns is well established. Cancer incidence is closely related to increasing levels of deprivation. Because community pharmacies are more prevalent in deprived areas there is potential for them to make an important contribution to health improvement by delivering interventions aimed at reducing cancer incidence amongst those at greatest risk. OBJECTIVES: The aims of the study were: to examine the association between high risk behaviour and deprivation and contribute evidence to the case for or against targeting cancer prevention campaigns at specific risky behaviour in areas of high deprivation. METHODS: This study has an ecological design and involved retrospective analysis of data derived from 5739 sun-safety quizzes completed by pharmacy users at 714 community pharmacies in Wales during May 2014. RESULTS: Levels of participation in the campaign and high risk sun-safety behaviours were higher in more deprived areas. Respondents from deprived areas had significantly lower sun-safety knowledge. 3802 (66.2%) respondents reported 'excellent' or 'good' knowledge of behaviours which promote sun-safety but this did not necessarily translate into how individuals behaved. 3787 (66.1%) respondents considered community pharmacies an acceptable location for the campaign and for discussing the signs and symptoms of skin cancer. KEY FINDINGS: Results show association between high risk behaviour and geographically defined deprivation adding to the case for targeting cancer prevention campaigns at specific behaviours and geographies. CONCLUSIONS: Community pharmacies appear to be acceptable locations from which to deliver health improvement campaigns in terms of participant recruitment, ease of delivery, and pharmacy user feedback.

Sowing the seeds or failing to blossom? A feasibility study of a simple ecotherapy-based intervention in women affected by breast cancer.

Engaging in nature-based activities is recognised as providing the basis for easily accessible, cost-effective interventions which can have other important physical and psychological health outcomes. The aim of the reported feasibility study was to explore the acceptability and potential psychological benefits of a simple ecotherapy-based intervention for individuals affected by cancer. A total of seven women from an existing breast cancer support group agreed to take part in the study by cultivating and customising a garden bowl for three months, maintaining a diary, and participating in a focus group at the end of the project. The analysis of the focus group data revealed four main themes that suggested that the women found engaging with the intervention to be therapeutic on a number of different levels: reflecting their cancer journey, a source of positivity, making meaning through memories, and a sense of control provided by engagement with the intervention. Engagement with the diary-writing element of the intervention, however, was not as widely endorsed by the group, as participants were even reluctant to make use of an online forum to share experiences of engaging with the intervention. Overall, the study suggests that the flexibility of level of engagement with an intervention is an important factor in developing acceptable interventions, and that the value of targeted recruitment to improve engagement with novel interventions is paramount.

The development of a distraction-based coping intervention for women waiting for genetic risk information: a phase 1 qualitative study.

This study explored the emotional and coping responses of women referred for cancer genetic risk assessment and the acceptability of a written distraction-based coping intervention. Fifteen women recently referred into the Cancer Genetics Service for Wales (CGSW) took part in a focus group study. The women were divided into two groups, each of which met twice. During the first session, each group discussed their psychological responses to the referral and how they coped with their worries. Women discussed the potential role of the intervention in minimising distress. Analysis of the transcripts revealed that most women welcomed the referral to CGSW and that it did not create distress. However, there was concern for family members and anxiety about subsequent stages of the assessment process. The intervention was considered appropriate and potentially effective.